interesting about the ecchinachea. It really is a hard one to figure out. Lots of conflicting studies. There's tons of it growing around here though, I'll collect some and give a try.
I'ts late now and I'm off to bed. But I'll pm you tomorrow if that's alright. I'd like to discuss naturals some more with you, but I think we're getting a bit off topic for this thread.

One thing about the coconut oil though, if anyone is interested. Whether or not it acts as an antiviral I can't say for sure (as you pointed out), but the oil does convert well into energy in a way that agrees with me. Many stimulants and other 'energy' products make me feel really wired and then I crash. About 20 mins after taking about 2-4 tbsp of coconut oil I feel very warm and my cardiovascular system is noticeably stimulated. I think it would be a good supplement for many of us for that reason.

Hi Knackered, I know several people who have recovered, and some who are recovering, and of course many who are still ill like myself

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.

Two takes on recovered people:

If regarding people with the label CFS who have 'recovered' then there is evidence for this in CFS , because there is no agreed diagnostic measure to show 'health'. There are many many tests available to show disease in ME and CFS - yet no one bothers to use this as objective evidence, because quite frankly - the medical profession doesn't care and wants to spend billions on advertisments to stop people eating pizza.

A recovery in ME or CFS - simply requires patient testimony. ' I am better'. Great for the patient who feels better, bad for science. ME and CFS are diagnostically different conditions. One is a disease, one is a syndrome. As we all 'flip' the terms ME or CFS, no one actually knows who has what, or does know, and confuses matters by alternating the label. So it's a muddle, and mess. Whatever the situation it's obvious this group of people with ME or CFS are all sick for entirely different reasons..

A recovery, should always be studied objectively and scientifically, documented and published - it is that rare. Who actually recovered, what measures of disease did they have, what 'cured' it (if anything) and what does this mean. None of this ever happens and we are left with the situation akin to people saying they have X51 disease and are 'cured' and people who say they have X51 disease and are not.

Logically, both cannot have' it' if neither has the same afflictions. Yet until criteria are stricter (or a test exists) - then both do have it! Hence we have miracle tales of 'recovery' in ME and CFS that never actually show any scientific evidence whatsoever. As previously mentioned, it's not needed. Great for the patient, bad for science. In Dr Lucinda Bateman's last talk on XMRV recently, she mentioned that many of her patients with 'CFS' recover - yet she then said maybe these are the ones who don't have XMRV. On that basis XMRV isn't CFS. CFS isn't a retroviral infection at the end of the day, and many people who 'signed up' (involuntarily) to CFS don't need one to be validated.

If regarding XMRV - the recovered ME CFS people have no evidence they are infected with XMRV, yet now well. The first XMRV culture test is only barely out. (We know that to theoretically suppress XMRV one needs powerful immune drugs that aren't even developed, trialed or in use in any patients at all).

We need to know the pathogenesis of XMRV.

How quickly does it 'infect' and 'damage'?
How many organ systems does infect? Brain, heart, liver, pancreas?
How long does it take to infect damage that cannot be 'recovered from'?
How long does it take to die and what damage causes this death?
Who dies and what from? Cancer? Heart Failure? Neuropsychiatric problems? Dementia?

To 'recover' from ME or CFS therefore doesn't mean anything scientifically - sadly. It would mean a lot if there was a 'test' for ME or CFS and there still isn't. There are many tests one can do, but sadly these are not 'official'.

I am increasingly convinced annoying people like me don't belong in the label ME CFS since ME was watered down to not much at all. I belong in an XMRV group, yet there isn't one. Unless (ironically) this is one. How many of us have XMRV? I'm guessing on 10% or less. I see those people here (or less) and stick like glue. That is quite silly. Silly, but necessary - due to the mish mash of all being thrown in an illness pot together and stirred up and ending up bumping into each other.

Conclusion:

New label for XMRV+ people needed, pronto. Is it XMRV+ or XAND?
New understanding of what CFS now is, or was, or will be needed to be, pronto.
New agreement that you cannot 'be' both CFS and XMRV+ (ME or CFS is not XMRV yet XMRV is in ME and CFS) - confusion alert. .

Then we can be in appropriate groups - finally, and through this we can all be helped better.

At the end of the day if people like Lucinda Bateman and Nancy Kilmas doubt that her CFS patients have XMRV in significant levels, then to all be going to see these two experts for the same assumed reason is an error.

Meeting and treating a patient with an entirely different pathogenesis and the same label - is ridiculous, period.

Hi DysautonomiaXMRV, and big up to your pioneering self, many thanks for everything. Your post was particularly thought-provoking and induced the following ramble...

Although it's quite right that there's clearly no evidence as to long term prognosis of (ME, CFS) XAND, the little hints we've just had seem to me to be tentatively suggesting a model that could explain subgroups of symptomologies. One thing that makes a lot of sense to me is the idea that viral co-infections like EBV, HHV etc can become chronic and/or have the potential to cause long-term damage in people with XMRV (can't recall exactly how that's supposed to happen). So therefore there would be big differences between people's symptoms based on their viral co-infections - somebody who had very few viral co-infections might escape certain consequences of viral co-infection.

Another factor that's recently pointed me towards the more 'spectrum' approach is looking at the polls here which show no correlation between reported severity and XMRV test result. This is what one would expect if people with XMRV have a range of symptoms from moderate to severe, in other words, if it's true for both severe and moderate patients that between half and two-thirds have XMRV. (Which would still leave the possibility that the rest do too, in a harder-to-detect status, or that there's another condition mixed in with XAND in the CFS wastebasket/permanently-pending tray).

Incidentally, if there are two or more conditions mixed together in 'ME/CFS', it's also going to be to the benefit of the other half of the mixture to become a well-defined patient group. So whatever the answer, everybody wins!

As one of the 'recovered' I've been wanting to come on for a while and say that I definitely don't see myself as 'cured', and I have for many years been as confident as I am that I'm not somatising, that this is a life-long condition. I am in remission and may currently function at quite a high level (within strict parameters) but after the horrific storm of 20+ symptoms (which lasted nearly a decade) gradually subsided, I am still left with some core, fundamental allergies and sensitivities - a major and atypical immune abnormality - that leaves me vulnerable to exposure and relapse at any time. This is what I've known in my heart for years, and XMRV seems to bear this out as a reality too.

I don't know if I'm XMRV+ or not, and whether I'm ME or CFS, or even WTF, but all I can say is that it does seem to me that XMRV and the experiences of this community fit almost perfectly with my own experience. Even though aspects of some people's experience are very different to, and far more severe than, my own, still there seems to be a commonality at the core of it all such that I can easily imagine that we are on the same spectrum. Otherwise I wouldn't be here, obviously...:Retro smile:

One particular detail being significant perhaps, which is that now that I look back, during the years when I was making the biggest, gradual improvement, I was popping non-steroidal inflammatories like smarties. Under medical advice too - big bottles of them under prescription - for two unrelated conditions. One being severe neck and back pain for many years - eventually that began to improve after a brilliant 8-week course on back pain, as part of which they went into the details of the side-effects of all the major painkillers. Masses of information, and an understanding of the signfiicance of the possible long-term effects on the liver etc. Suffice to say, for anyone worried about that, that after that course I now feel 100% comfortable about taking them (within the parameters of the stated dose, which is of course a little conservative) whenever I feel the slightest pain or there's the slightest chance of inflammation - because the inflammation itself is harmful so it's the best long-term medicine anyway, not just pain relief. By the way, since a number of people have previously posted to ask what are 'anti-steroidal' inflammatories, they are just your basic over-the-counter anti-inflammatories - nurofen in the UK, based on ibuprofen, don't know what they're called in the US?

Being male might have helped too; I've had a better chance than most ME/CFS sufferers to avoid hormones encouraging XMRV, I do need to avoid stress to prevent relapse so leading a restricted life and meditating might have been helping my cortisol levels, and anti-inflammatories, plus the absence of any viral co-infection, seem to complete the picture of me having done everything and been everything that Dr Mikovits seemed to be saying might be beneficial.

Anyway, so excited about the presentation and I didn't even get to see or hear any of it, apart from the half-hour chunk and what you wonderful people have summarised so well on here. Anybody else here have a dream in which a group of British researchers dressed in clown suits cower together round a psychotrickerist while Dr Mikovits monocycles round them, juggling and somersaulting as she goes? She'll be pulling rabbits out of hats next...

I was too ill to watch the webinar yesterday, but just want to say a big thanks to everyone who chipped in, particularly Dr Yes for the very helpful summary of the key points (posting again below - for anyone just catching up)

Well, here's what I could glean from the Q & A despite numerous interruptions and brain fog/smog/toxic gas... It is HIGHLY unlikely that even the quoted stuff below is the actual quote, OK?? Just as near to it as I could get... But I'm pretty sure I got the essence of it.

She says around half of negative VIPdx PCR results may be false negative (her take), and "there's no reason to pay to get tested right now"... (rough quote)... says it would be better to participate in research studies at this time...

Said non-steroidal anti-inflammatories could help (Does she mean NSAID?) via reducing inflammatory processes that seem to activate virus; said speculatively that supplements that boost NK cell function could help (didn't say which kind are safe, but said some are); said be careful since supplements are not FDA regulated and may contain toxins that would make things worse for illness...

Hypothesizes that XMRV may cause underlying immune defect that allows other pathogens to become chronically activated (Lyme, HHV6, EBV, etc...); if they can treat the retrovirus, the chronic Lyme, herpesvirus, etc. will go down.

Said you don't need to stop antivirals for XMRV test because they don't target retroviruses anyway.

They don't know about sexual transmission or vertical transmission for certain yet, but she thinks vertical is likely.

Said if nothing else comes out of this study, she hopes this allows people to be diagnosed early, when it's most treatable, as opposed to 6 months later when your immune system is already messed up by virus.

Regarding the Imperial College study--
On using plasmid in a water control: "I can see a bowling ball in a bathtub, too, but I can't see a needle in a haystack". Also: "why would they choose to use a different section of DNA than we did?" Another: "One of the things you have to use is at least 750 nanograms of DNA in blood to get PCR results"; IC did not quantify the DNA in their samples so they don't know if there was enough...
And: "If they had asked us to for postive blood samples, we would have sent them; we would draw it and send it directly so there was no chance of even potential contamination (with mouse retrovirus)." Stressed over and over that there's no way they had contamination with mouse retrovirus... gave all the reasons...

Geography: Yes, maybe there's XMRV-2 variant in UK (i.e. it's possible, at this stage we don't know); she got a desperate email from China and the sample according to Dr. Sam Chow(?) contains what may be a more aggressive related virus - she's not sure, and said this is all anecdotal..

Mentioned a cytokine/chemokine immune signature they're trying to refine into a biomarker for XMRV infection (in CFS, I think); problem is it's highly time-dependent; cytokine expression is "like an EEG" of viral activity and changes/spikes very irregularly.

Looking for viral DNA in saliva as part of their transmission studies (based on anecdotal evidence of that sort of transmission; just to rule it out); looking into XMRV in POTS, some autism patients (who have NK abnormalities)

She's working with drug companies for antiretroviral drug development

Piggybacking: "No evidence for that in any retrovirus"

They're working closely with the Federal Working Group/ DHHS on all relevant issues - I assume the blood safety issue is part of what she's talking about. She doesn't seem to have any complaints yet on how all that is going, which is good...

Says write to her at: judym@wpinstitute for questions (answer within a week, if not send to her again)

Well, now I REALLY want to hear the last bit of the actual talk!

p.s. if anyone's wondering..accidentally deleted this post when i thought i had put it in the wrong thread.. :Retro redface:

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And also to Dysauto for a good laugh RE all the technical difficulties

*Did she say there's no point anyone getting tested privately for XMRV??

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She encouraged participation in XMRV studies rather than getting tested privately. She said that of private testing there are false negatives, but no false positives. Private testing of the PCR type at this time appears to be resulting in a 40% positive rate. She said PCR testing needs to be tested multiple times for accurate results...they tested their patients four different times. So I definitely got the impression that private testing now is generally more expensive than it's worth for the results, but then again it's hard to put a price on possibly knowing for sure what's wrong with you.

*I cannot vouch for my memory on this post. THe information is accurate as far as I know, but if anyone has a correction please don't hesitate to speak it.*

1) Does the body automatically downgrade it's production of cortisol due to 'knowing' cortisol is good for XMRV and is this why on cortisol type drug trials, many patients with ME and CFS report they are worse. From memory, one trial was stopped due to adverse affects. (Are these adverse affects due to XMRV replicating further?). Either way, the 'theory' that ME and CFS is 'caused' or maintained' by low cortisol has been dismissed. However, cortisol is involved and not functioning efficiently. Why?
Why are ME and CFS patients biologically unable to tolerate stress and either over or under produce adrenaline? One answer could be due to Autonomic Nervous System Dysfunction (Dysautonomia). If so, is ME and CFS actually Dysautonomia
with a political label? Or is Dysautonomia just one dysfunction found in ME and CFS. Many would argue the later, yet on close examination the two conditions (Dysautonomia and ME and CFS) are very closely linked.Why?

2) Does the Adrenal gland become damaged in ways we don't yet understand (E.g. evidenced by the 'blunted cortisol response curve') seen in ME and CFS patients who undergo a Short Synacthen test. Doctors cannot diagnose Addison's disease here, but they realise something is wrong, but what? In other words, why do patients with ME and CFS not have 'enough' cortisol when stressed? Baseline is usually not very good, but also not dangerously low to be given a new diagnosis.

3) Why does the Adrenal gland simply 'shrink' (atrophy)? We've seen this in ME and CFS patients who've had CT scans of their adrenal gland. Are these actually ME and CFS patients, or people with adrenal gland atrophy causing CFS symptoms?

4) If those with XMRV are born with XMRV, does XMRV impair the growth and development of the adrenal gland, or the adrenal axis in some way? If so, how?

5) If we are born with XMRV, do other viruses (we all know about in ME and CFS) damage the adrenal gland, or the adrenal axis in some way? If so, how?

6) Does XMRV infect and damage brain cells, (neurons) that control the adrenal/cortisol system - explaining a 'central' explanation. If so, why are some adrenal glands shrunk - apparently.

7) Hydrocortisone, Fludrocortisone are sometimes given in small doses to people with ME and CFS. Usually for small periods of time. Is it possible, that patients who report feeling 'better' on these medications are simply gaining a boost in a medication that can help fight against O.I (Orthostatic Intolerance) and not gaining a boost from any adrenal benefit, that (possibly) could actually make patients worse. This may counteract the positive effect, and explain why cortisol type medicaitons tend to be a dead end in ME and CFS- unless patients are shown to have clinical adrenal insuficiencey.

8) There are differences in various countries (and health systems) what is classified as adrenal insuficiencey, and differences in who hands out what type of drugs. American health care professionals are famed (in the UK) as giving out 'dangerous' medications to anyone with a wallet. Conversely, in the Nanny State UK (where everything is tightly controlled) one has to be far sicker, to receive medications. Who is right and what is 'safe'? A prime example of this is the diagnosis of Hypothyrodism in the UK. Levels in America are higher than in the UK. Americans report they can tolerate the drugs safely and have much better health on Thyroxine. So the same goes for Cortisol. Is what we are told correct?

People who sell drugs to patients with (unfortunately for us) 'vague' disease such as ME and CFS in a free society can make lots of money from them by handing out things such as cortisol. Conversely, a socialised medical system in the UK, will do their best to create scare stories and tell people they aren't sick enough to need medications. Another example of this is Lyme disease, a condition that has been ordered not to be tested for - in patients with hysteria (Medically Unexplained Symptoms) which the UK Department of Health claim is CFS. Lyme disease is thus hidden in the populace along with XMRV, and possibly - adrenal insuficiencey type conditions, which may include ME and CFS.

8) Are patients who report massive benefits from using Cortisol type medications, actually misdiagnosed with a sub-clinical or pseudo adrenal insuficiencey disorder? These conditions massively overlap with ME and CFS after all. Do we actually know, who has what condition? If so, on what basis?

Is the general thought that we are all (meaning ME'ers) are born with XMRV then? Either passed onto us by our father or mother that has XMRV already? If that's the case then all of their kids are at risk presumidly, some go on to get ME/CFS, some don't, but they are all ticking time bombs until the right trigger comes along (maybe it never does in some cases). In my case it would of been passed to me via one of my parents, i then passed it on to all my kids, 2 of which have ME/CFS, the other 2 i just have to prey won't get triggered!
It also seems various auto immune diseases run in family, so maybe XMRV triggers various diseases, not only ME/CFS?

She encouraged participation in XMRV studies rather than getting tested privately. She said that of private testing there are false negatives, but no false positives. Private testing of the PCR type at this time appears to be resulting in a 40% positive rate. She said PCR testing needs to be tested multiple times for accurate results...they tested their patients four different times. So I definitely got the impression that private testing now is generally more expensive than it's worth for the results, but then again it's hard to put a price on possibly knowing for sure what's wrong with you.

*I cannot vouch for my memory on this post. THe information is accurate as far as I know, but if anyone has a correction please don't hesitate to speak it.*

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I thought this was an important point and something I hadn't heard addressed before.

She said they had multiple samples, each collected at different times. She hypothesized that the patients had gone to the doctor and had blood drawn when they were feeling particularly ill. She had an average of four samples per patient. If they didn't find the virus in one sample, they tested the next. They DID NOT just simply re-test one sample four times. She made it clear to me that the amount of virus in the sample was crucial to finding it and suggested that the sicker the patient felt, the more virus in the blood. Also suggested that's ONE reason the IC study didn't find it.

1) Does the body automatically downgrade it's production due to 'knowing' Cortisol is good for XMRV and is this why on Cortisol type
drug trials, many patients with ME and CFS report they are worse. From memory, one trial was stopped due to advere affects.
(Are these adverse affects XMRV replicating further?). Either way, the 'theory' that ME and CFS was 'caused' by low cortisol
has been thrown out. However Cortisol is involved. Why?

***I think there are two ways to look at changes that occur in the body in CFS. One is that there is "wisdom" built into the body, so that its responses to a disorder are coordinated in such a way as to do what's best to preserve life. Whether one believes that this is a result of design or of evolution, it appears to be valid. Thus, one can view changes as adaptations to preserve life. This is a position that is strongly held by Dr. Cheney, for example. Under this type of thinking, cortisol output is lowered as a compensation for a more fundamental problem, and raising cortisol directly is not a good idea. I think the evidence you cited supports this idea in many PWCs, though some appear to benefit from a small amount of supplementation of cortisol.

***The other way to look at it is mechanistically, from a biochemical point of view, i.e.,. what is the immediate or direct cause biochemically of the lowering of cortisol output? I think that in most CFS cases the problem is not in the adrenals themselves, but higher up in the HPA axis.

2) Does the Adrenal gland become damaged in ways we don't understand (E.g. the 'blunted cortisol response curve') seen in ME and CFS
when patients undergo a Short Synacthen test. Doctors cannot diagnose Addison's disease here, but they realise something is wrong, but what?
In other words, why do patients with ME and CFS not have 'enough' Cortisol when stressed? Baseline is usually not very good, but also not dangerously
low.

***I suspect that in most cases the production of ACTH is unregulated and low. ACTH is produced by the hypothalamus/pituitary, and glutathione depletion there interferes with redox control of cysteine, which is one of the amino acids used to make the POMC molecule, which is the precursor of ACTH and is used to form the signalling "hook" that normally directs this molecule to the regulated secretory pathway. Without a properly formed "hook," the molecule goes to the unregulated secretory pathway, and eventually, not enough ACTH is made, lowering the output of cortisol by the adrenals.

3) Why does the Adrenal gland simply 'shrink' (atrophy)? We've seen this in ME and CFS patients who've had CT scans of their adrenal gland.

***I think this results from lowered "drive" by the lowered level of ACTH production.

4) If those with XMRV are born with XMRV, does XMRV impair the growth and development of the adrenal gland, or the adrenal axis in some way?

***I don't think this is the mechanism, but there is a lot we don't yet know about the action of XMRV in CFS.

5) If we are born with XMRV, do other viruses (we all know about in ME and CFS) damage the adrenal gland, or the adrenal axis in some way?

***I don't think this is a significant effect, except that viral infections cause the immune system to demand more glutathione, and that contributes to glutathione depletion systemically.

6) Does XMRV infect and damage brain cells, that control the adrenal/cortisol system - explaining a 'central' explanation. If so, why are some
adrenal glands shrunk?

***Again, I think the mechanism is depletion of glutathione in the hypothalamus/pituitary, lowering and deregulating the output of ACTH. I think the adrenals shrink because the "drive" by ACTH goes down, so that there is less demand on the adrenals from higher up in the HPA axis. I think that's the "central" effect.

I thought this was an important point and something I hadn't heard addressed before.

She said they had multiple samples, each collected at different times. She hypothesized that the patients had gone to the doctor and had blood drawn when they were feeling particularly ill. She had an average of four samples per patient. If they didn't find the virus in one sample, they tested the next. They DID NOT just simply re-test one sample four times. She made it clear to me that the amount of virus in the sample was crucial to finding it and suggested that the sicker the patient felt, the more virus in the blood. Also suggested that's ONE reason the IC study didn't find it.

NSAID's (apart from asprin) leave me feel drugged and toxic and much more weak and ill.

This may be just me or could be an XMRV thing?

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Hi. And this is why ME and CFS is a mixed grill.

In terms of emotional stress, you report the reverse of others. (Stress intolerance and ME and CFS is renoun), critically though, you don't have this - you and others have the same label though. What does this tell us? It's immensely complex. Some people report chest pain at 150/100 some may walk around a hosptial ward and be unaware their BP is 220/160 - Why? Different reason for hypertension. So we're all individuals, and all unique.

Your ability to not be affected much by emotional stress, is unique in someone with low cortisol because cortisol 'protects' us from stress. A 20 yr old witnessing a car crash will 99.9% cope with the 'stress' (physically)' due to an efficient cortisol stress response system. An 80yr old will have a higher chance of death due to the inefficiency of an aged body and the psychogenic response of 'stress' on the cardiovascular system (Stroke/Heart Attack). People with ME and CFS, especially affected by the condition severely (especially with Dysautonomia), often are like old people. We get chest pain from an argument (emotional stress) like an 'old person', yet we're 21 maybe. Yell at someone with POTS in a classroom and someone may be calling an ambulance. Yell at someone with low cortisol and the same may happen also. Interesing to wonder if there are links? Is it XMRV? Maybe in a sub section of people.

Your experience could be due to the fact you may not have Dysautonomia and/or your brain is unable to mechanically 'launch' a stress response, so you feel no stress. No Dysautonomic can (biologically) deal with any stress and thus emotional control of stress is impossible. (Hence Dysautonomia is such a horrible thing to have. Mind over matter doesn't exist in the condition). Emotional stress involves cortisol. E.g. Stress (Emotional or Infection) someone with Addison's disease (Very low cortisol) and they can have an Addissonian crisis and die without immediate emergency care. Emotionally stress a Diabetic, and all hell breaks loose and one can wake up with a blood sugar of 50. Yet the same goes for a virus in Diabetes, just as you mention, a virus makes you worse also. Viruses makes ME and CFS worse, and Dysautonomia.

What is frustrating is we need another decade research on this, never mind XMRV as well - which we know nothing about. So many studies need to be done, and getting the patient cohort separated into groups (of whom scientists are actually measuring) is the key. For example, if you have very low cortisol, you would be excluded from a diagnosis of CFS, as CFS is 'unexplained'. Low cortisol induces symptoms of CFS, but is (currently) not allowed to 'be' CFS.

Is this crazy or accurate? No one knows - and not knowing is crazy! Ideally we need to clone Dr Mikovits and ask each version of Judy to organise this whole CFS and ME thing right now - then travel back to 1980.

What sort of supplements have been recommended if any? Sorry i didn't watch last night & i'm just picking up little snippets from everywhere on here!

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Dr Judy made it clear that she's not a clinician and she was speculating about supplements. As I remember, some folks in the audience were throwing out different ideas and she was suggesting they might help.

Dr. Klimas recommended taking a good multiple, B complex and anti-oxidants such as CoQ10.

Hi; there is some evidence that a good high-alpha whey with lactoferrin raises NK cell activity --the quickest route to evidence that I can think of at the moment is the AOR website, www.aor.ca , look under Immune Ultra in products. And I remind folks that there is a little evidence that Artesunate has some activity against HIV, and therefore possibly against XMRV too (that is pure speculation, of course)--see citations on the Artemisinin/ Artesunate thread. Chris